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@ARTICLE{Walendzik:281536,
      author       = {Walendzik, Anke and Weitzel, Milena and Giebel, Godwin D
                      and Raszke, Pascal and Wasem, Jürgen and Levin, Johannes
                      and Wagemann, Olivia and Wlasich, Elisabeth and Nübling,
                      Georg and Pantel, Johannes and Tesky, Valentina A and
                      Schall, Arthur and Hüer, Theresa},
      title        = {{P}atient {J}ourney von {M}enschen mit {D}own-{S}yndrom und
                      {D}emenz: {Z}ugang zur und {S}chnittstellen in der
                      medizinischen {V}ersorgung – eine qualitative {A}nalyse |
                      {A}ccess to and {T}ransitions within the {M}edical {C}are
                      {P}rocess of {P}ersons with {D}own {S}yndrome and
                      {D}ementia: {A} {Q}ualitative {A}nalysis},
      journal      = {Das Gesundheitswesen},
      volume       = {87},
      number       = {10},
      issn         = {0941-3790},
      address      = {Stuttgart [u.a.]},
      publisher    = {Thieme},
      reportid     = {DZNE-2025-01154},
      pages        = {604 - 612},
      year         = {2025},
      abstract     = {Compared to the general population, individuals with Down
                      syndrome carry a much higher genetic risk of developing
                      early onset Alzheimer's dementia. This leads to unique
                      challenges and the need for a targeted patient journey.In a
                      qualitative interview study with medical professionals,
                      patient organisations and formal and informal care persons,
                      we assessed barriers within the medical care process of this
                      patient group as well as current approaches to overcome
                      these problems. The study is one module of a multi-method
                      project founded by the Innovation Fund of the German Joint
                      Commission. The results presented here focus on access to
                      and transitions within the medical care process. 14 guided
                      interviews were conducted by a team of moderators by video
                      conference, recorded and transcribed. The analysis of the
                      results was carried out as a qualitative content analysis
                      based on the methods of Mayring.Given the varying degree of
                      premorbid intellectual disability, difficulties recognizing
                      dementia symptoms were reported leading to delays in
                      initiating the diagnostic process. Limited knowledge of the
                      special disease risk and symptom manifestation in routine
                      medical care as well as the lack of specialized medical
                      institutions were identified as additional hurdles.
                      Insufficient dissemination of information about existing
                      specialised institutions to regular physicians and
                      caregivers was criticized. All stakeholder groups drew
                      attention to limitations in access to occupational and
                      speech therapy because of the inadequate number of
                      specialized therapists. Improvements suggested by the
                      interview partners focussed on topics such as the
                      implementation of guidance of the patient journey to and
                      within the medical care process by one institution, easily
                      accessible information for patients and caregivers as well
                      as optimised training for physicians in routine
                      care.Barriers such as insufficient availability of
                      specialised service providers and information deficits about
                      the specific disease risks and symptoms of the population
                      have also been identified in international literatur; in
                      addition, management and coordination deficits in the
                      fragmented German health care system represent well known
                      additional barriers. Approaches to improve the situation can
                      be seen, on the one hand, in improved information and
                      training offers for caregivers and service providers, and,
                      on the other hand, in the expansion of the range of
                      specialized service providers, in particular the Medical
                      Centres for Adults with Disabilities. Informed by these
                      study results and the results of other project modules,
                      health policy recommendations for the improvement of the
                      patient journey of patients with Down syndrome and dementia
                      will be developed in the last project module.},
      keywords     = {Down Syndrome: epidemiology / Down Syndrome: therapy / Down
                      Syndrome: diagnosis / Humans / Germany: epidemiology /
                      Dementia: epidemiology / Dementia: therapy / Dementia:
                      diagnosis / Health Services Accessibility: statistics $\&$
                      numerical data / Female / Male / Middle Aged / Adult /
                      Qualitative Research / Aged / Transition to Adult Care:
                      statistics $\&$ numerical data},
      cin          = {Clinical Research (Munich) / AG Levin},
      ddc          = {610},
      cid          = {I:(DE-2719)1111015 / I:(DE-2719)1111016},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:39824222},
      pmc          = {pmc:PMC12483601},
      doi          = {10.1055/a-2486-6360},
      url          = {https://pub.dzne.de/record/281536},
}